Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Things My Daughters Have Seen

I have close to 300 stories “prompted”, just sitting in limbo. I decided to just go back to the oldest one sitting in my cue, and see if I could finish it. To my surprise, I had only the title started with a note on the topic, referring to things that my daughters have witnessed during my survivorship of Hodgkin’s Lymphoma. As it turns out, this post actually connects to something that just happened recently.

My youngest daughter was applying for a specific scholarship for her first year of college next year. She was doing so from a unique perspective as the topic dealt assuming it was the applicant herself who the essay would be about. The subject dealt with dealing with cancer, how it was overcome, and any impact on her life. My daughter has never had cancer, and I hope with every fiber of my being that neither of my daughters ever have to face cancer. But cancer has had an impact on her life, her entire life.

Obviously neither of my daughters were even thought of when I dealt with Hodgkin’s Lymphoma back in 1988. As they grew, and learned of the word “cancer,” there would be occasional small, appropriate conversations about “what their Dad went through.” It is always a difficult thing to decide, what and how much to tell a child about cancer, of course depending on age. Up until 2008, just having started school, both of my daughters were already sharing in classroom discussions that their Dad was a cancer survivor. They even knew the specific cancer to bring up. But the limited knowledge was by design.

As my daughter began to conceptualize her scholarship essay, on how cancer has impacted her, it opened a very uncomfortable door for her. Up to this point, we have never really talked in great detail about my health events that occurred due to the late developing side effects from my cancer treatments. All my daughters really cared about up to a certain point, was that Dad always came home. The details were kept to a minimum, the part of the body effected, and that it was fixed. But now nearly fourteen years later, memories of what she witnessed, and details of what actually happened, and could have happened, finally came to light. My daughter finally learned how close, several times, that she came to losing me.

The essay was not just about the actual events of what had happened to me each time, but the disruptions of her routines, the need to change plans, someone other than her mother or father having to pick her up from school, and all too often, what the inside of a hospital looked like. There were times that I was “not at home,” sometimes for days, as I was in the hospital, no explanation given just “Daddy will come home.”

But as I have one daughter of adult age, and the other almost, it has become important for them to understand what has happened to my body over the years, and what potentially lies ahead. This scholarship essay was finally the opportunity to discuss and reveal the unknown for them, and come to learn, contrary to what they had been told by some of their family members, that their Father has some health issues of great concern.

And so we began with the big one, my first heart surgery. This could have easily been the end, in reality it was just the beginning. In the “I was going to die” episode number one, my younger daughter aged three at the time, was finally told that I had what was nicknamed a “widow maker” blockage of my heart. At first there was confusion for her, because she knew what the word “widow” meant, but somehow this would have resulted in the death of her mother. After clarifying for her, she learned what I had been told by my cardiologist back in 2008, “it was not a question if I was going to die from a fatal heart attack, but when.”

Both of my daughter had childhood friends who lost their Father at a young age, also due to cardiac issues, but not cancer treatment related. My daughters could not relate to their young friends what it was like to have to visit their Father’s grave, not to spend holidays with their Dad, or do things with each other. My daughters knew their friends’ Father was dead, but the children really never let on, that it affected my daughters any further than the knowledge.

But now, as my daughter and I were on Facetime working on this essay, the potential loss of her own Father became a reality to her, of course not wanting to find out what it was really like, as with her friends.

In 2008, I needed to have an emergency triple bypass, that was downgraded to a double bypass (a big mistake later realized in 2019). It was the first time that I was ever away from my daughters. It could not have been under the worst possible circumstances. Again, faced with the “what and how much” do you tell a three and five year old, they were told that I was just staying overnight somewhere, and I would be “fine,” the first of many times my daughters were deceived about my health, and not by me. Four days into my recovery, still in the hospital, my daughters were brought in to see me. I was still connected to machines, and had at least one hose still coming out of me. My older daughter was not intimidated by anything, and quickly came to the upper part of my hospital bed, encouraged to go easy, that I had a huge “booboo” in the middle of my chest. However, my younger daughter, was clearly frightened and upset, having never seen me laid out like I was. After about a half an hour, she found her way, nestled against the left side of my upper body. Her excitement when I finally came home could not be contained.

My older daughter remembers most of that time period, my younger daughter does not. But now that it had been discovered that I had other issues related to my treatments, there would be more time away from my daughters,

In 2010, my daughters were confused when their “Poppop” was picking them up from school. I honestly do not know what they had been told. I was being rushed to the hospital, bleeding, and in extreme pain.

Then two years later, and for the first time, an episode occurred that my younger daughter is able to remember. At 3am, I was being rolled out of my house on an ambulance stretcher, screaming in intense pain, just having had a bout with uncontrolled vomit. I do not have many memories of that night, as I am pretty sure I was hallucinating. But as the paramedics rolled me out of my bedroom, there at the top of the steps, were my daughters, then aged 7 and 9, wide awake in their pajamas, standing next to a police officer who was assisting the emergency.

My daughters were never told how serious this situation was. But according to my doctors, I was dying from sepsis. My doctor, expressing frustration with me, chided me, “with as high as your lactic acid levels were, you were septic likely for at least 48 hours! What the hell took you so long to go to the hospital?” A lactic acid level of 4mmol/L is indicative of a sepsis infection. And at that level, the mortality (a.k.a. dying) rate is near 30%. I pleaded with my doctor, I felt completely fine when I went to bed that evening, other than being a bit exhausted from the hectic week I had just gone through. Unknown to me, I had developed a form of pneumonia, called “aspiration”. Unlike other pneumonias, following illnesses, aspiration pneumonia is brought on, by inhaling food, saliva, or stomach acid into the lungs. For the purposes of this post, I am not going to get into the technicality of this episode, but this event was brought on courtesy of late effects from my treatments.

I would have a relapse of aspiration pneumonia nine months later as doctors tried to figure how to deal with my esophageal issues causing this. But again, my daughter was hearing for the first time with this particular event, I had almost died. But again, some around her continued to blatantly lie to her, that nothing was wrong.

As both of my daughters got older, I continued to have health issues pop up. But now being divorced and not living in close proximity to them, and due to the complexities of custody, my daughters were no longer told when I had these extreme situations come up, for fear that my health would somehow get used against me in court to prevent me from seeing my daughters, and it did come up on at least two occasions, fortunately being ruled in my favor.

Just as the pandemic hit, I had to have two more major surgeries, that I felt needed to be kept from my daughters, for fear of being misrepresented by those close to them. They would only hear about them when I had recovered which of course only reinforced what they were being told, “your Dad is fine.” But a little over a year ago, I made the decision, as I said, with them getting older and needing to know, I let them know of my third heart surgery having to be done. And being apart from them, unable for them to be by my side in the hospital, courtesy of technology, I was able to Facetime them from the ICU, that they could see where I was, and learn what had been done. And I could see for myself, that they were at ease.

But it was not just medical events that they were faced with when it came to me, my daughters could actually see the toll that my cancer survivorship had taken on me over the years. Just a simple walk in the snow, would leave me gasping for air. I have lost the mobility of my shoulders from radiation damage, my daughters now “wrestle” me to assist dealing with their luggage when they come to visit. I know my daughters “get it.” They have been told most of their lives, by certain family members, that there was nothing wrong with me, that I was fine.

Now, as my daughter writes her essay, we both now understand how my cancer has impacted her life and will impact her in the future. As parents, we struggle what and how much to tell our children when faced with health crisis. And it becomes difficult when their lives and activities are impacted, and cannot understand why. This is why I encouraged her to go for this particular scholarship.

From The Beginning, “Over The River…”

Thanksgiving with my Grandmother. I certainly have many memories. For most of my childhood, I lived with my Grandmother and her sister (pictured on the left), and come Thanksgiving Day, that meant the most wonderful smell in the world. Unfortunately, that smell began wafting up to my bedroom early in the morning, as the two of them began to make the holiday meal to feed a total of ten of us. Our kitchen table on sat eight of us, so that meant…

the dreaded “kids” table, usually a fold up card playing table. We had another full dining area, with another dining table, but since there were only two kids, the folding table is where we were put. Regardless of being in a different room for the dinner, I still got my hands on my favorite, the dark meat of the turkey, mashed potatoes, sweet potatoes, stuffing, and something called “stuffing from the bird.” This is when you take some of the already mixed homemade stuffing (it was never boxed), and stuff it into the turkey as it cooks. It was the same stuffing that was being served separately, but cooked inside the carcass, the “bird stuffing” basically is marinated with the flavoring of the turkey, an entirely different stuffing flavor, and SO GOOD! And I cannot forget the homemade pumpkin pie and pumpkin custard.

Eventually I would get promoted to the full table, which by then, was able to squeeze ten around, so perhaps the kid table had nothing to do with the capacity around the main dinner table.

In high school, Thanksgiving would be delayed for us to be able to attend high school football games. The dinner was ready once I got home after the game. I discovered there was a big difference with smelling the dinner being cooked all morning, and walking into the wall of the aroma of the feast to come.

Fives years after my high school graduation, Thanksgiving would never be the same.

In October of 1988, I had an itch on the back of my neck. I had discovered what felt like a huge lump, much larger than what would have been left by a mosquito. I was confused by the mass, as I was a relatively healthy kid growing up. I made a call to the doctor, a general practitioner, who made the diagnosis of a swollen lymph node due possibly to the common cold. He prescribed an anti-inflammatory drug called Naprosyn and recommended I take a break from exercising to give my body some rest it likely needed.

Two weeks went by, and the swollen lymph node did reduce considerably in size. Back to the gym I went. As I am prone to do, I resumed back to the exercise routine I had been doing without easing back into it. The next morning, I believed I had paid for that judgement, as I had developed such a pain in my left armpit, whenever I stretched out my arm. Clearly, I had overdone it.

I had spoken to as co-worker about my new “injury” and how it was likely I was going to miss our city league basketball league game. I mentioned my frustration with having just missed two weeks of the season, and being left-handed and unable to shoot or toss the basketball. He had recommended his physician as being good with sports injuries, so I decided to give him a shot.

I gave him the synopsis of how I got to his office. I noticed a lump. Took a medicine for it. Took a break from exercising. Started exercising. Now my left arm hurts. Simple. Cause and effect, a sports injury.

The doctor examined me and was concerned about the lump more than my arm. The lump had increased in size again. I grew frustrated with the doctor as I was not there to see him about the lump, which had been getting better. I was there because I hurt myself weightlifting. He did some bloodwork, which showed nothing. And I recall throwing in his face, “of course, I know there is nothing wrong with my blood. I have a sports injury.” I would repeat that sentence several more times over coming weeks. The doctor was making a recommendation for me to go see a hematologist/oncologist. Now, if you do not know those terms, do not look them up. I will tell you what they are soon enough. I just asked the doctor, “do they see sports injuries?” and he replied no. But I needed to get that lump looked at.

I stormed out of his office. Two days later I had begun receiving phone calls from that doctor, leaving me voice mails, insisting that I follow through with his recommendation to see the specialist, who was not a sports doctor. I walked over to my co-worker, and asked what this doctor’s deal was, why was he bugging me? He told me, “my doctor is a good guy. If he feels something is of concern, I would trust him.” Looking back at that particular moment, would be a life-changing, life-saving conversation. I made the phone call to that specialist the next day, and made a humble phone call back to my co-worker’s doctor, to inform him that I was following through on his recommendation. Subliminally, I was not doing it because there was something wrong. I was doing it because I wanted to prove to this doctor that I was the one who was right.

It was a rainy, dreary Tuesday, just before Thanksgiving. I pulled in front of the clinic, and there was a sign in the front yard with the doctor’s name that I was going to see, along with the title “Hematology/Oncology.” Still not recognizing the titles, only knowing it had nothing to do with sports, I walked inside, soaking wet from the pouring rain. I was handed at least a half dozen papers to fill out which I thought was a waste of time for a sports injury. Truth be told, having never really been sick, I had never had to fill out all of these forms. As a kid, my mother did it for me.

When I finished, a nurse had taken me back to an office, not an exam room, but an office. Moments later, in walked a man who resembled actor Jeff Goldblum, The Fly version, not Jurassic Park version.

The doctor sat down at his desk, took a glance through my folder. There was no way I was prepared for next. “Hodgkin’s Disease is a very curable form of cancer, especially when it is caught early.” I felt like the cartoon characters when they are caught shocked or in disbelief.

I honestly do not remember another word he said from that point on. I know that I argued that I cannot possibly have cancer. I had a sports injury. He had not even examined me. Who the Hell did he think he was? I have never considered myself an angry or violent person, but for the first time in my life, I felt pure rage. I could not have gotten any further away from what I felt was wrong. I do remember ending up in an exam room eventually, but not a single word of what was said. Literally, I likely only heard “blah blah blah blah blah” from that point on.

A few days later, I had begun receiving calls from the prior doctor, urging me to go forward with additional bloodwork and a biopsy. Biopsy? I do not remember that discussion, but as I said, I tuned everything out the minute the other doctor began talking about cancer.

I went through that Thanksgiving weekend in 1988, with my mind in turmoil and denial. But two more “2nd opinions” later, I had finally been convinced that I needed to undergo the biopsy, if for nothing more than to prove I was right and every doctor I had seen was wrong. Spoiler alert… I was wrong.

Every Thanksgiving after that, this memory gets triggered, the exact scenario playing over and over on an endless loop. I am not able to stop it, or as some have suggested to simply “get over it.” The next Thanksgiving, 1989, I was undergoing chemo for a relapse of my Hodgkin’s, and for the first half of the 1990’s, all I could think around Thanksgiving, “is this the year it is going to come back?”

Simultaneously, as I struggled with my survivorship, the dynamics of our family traditional Thanksgiving dinner began to change. Talk had begun about the bond that at least held us together on this day, my Grandmother. We soon began to realize that without her, we would likely no longer gather together. And in 1998, my Grandmother passed away from her 2nd battle with cancer, this time, ovarian cancer. And just like that, we no longer spent any holidays together with each other.

In the beginning of the 2000’s, if there would have been any hope of me finally getting a grip back on the holidays, it was going to be with the arrival of my daughters. But by then, I had developed a mindset as an employee and provider, that I worked every holiday offered by my employer. That in spite of having two young impressionable children who of course would have loved to spend time with me, it was felt that it was more important for me to bring home the extra cash for the family. We could spend time with each other after I got home.

And there you have it, why holidays mean nothing to me, especially around this time of year. Because even though I consider myself blessed in over 32 years of survivorship, I still carry the trauma of what happened 34 years ago.

Hands Up. I Can’t.

If you have ever flown, you are familiar with going through full body scanners. There are plenty of jokes made about what can be seen as you go through the scanner, but nothing that lets you see “intimate” body images. That being said, a “shape” does appear on the “human shape” ( a picture of a body, not my own), on the screen in the area of the middle of my chest. That shape is my artificial heart valve, which does contain metal. I also have a stent with my heart, and also my carotid artery. And I have plenty of metal clips in my chest cavity. Long story short, I am going to get extra attention when I exit the scanner. I have a card in my wallet that makes reference to the “hardware” inside my body, necessary to keep me alive, but I will still usually require a passing of the metal detector wand, and hand swab. Whatever, I am not worried.

The problem I do have with the process, is that I cannot raise my hands above my head and shoulders, as high as TSA would like me to. I can extend my arms outward which would give them a similar view as far as I am concerned. But going higher, is not possible. Related to my treatments for Hodgkin’s Lymphoma back in 1988, I received a large amount of radiation therapy. The damage that has developed progressively over the decades is diagnosed as “radiation fibrosis syndrome.”

Dr. Michael Stubblefield is a pioneer in the study of this condition, and one of my former physicians who I actually saw for this condition. The key word to focus on, is “sclerosis”. Typically you would hear this in reference to the cardiac system, as in a hardening of the arteries or valves. Well, if you apply that the the muscles in your body, it is the same thing, a hardening of the muscle fibers. This issue will also result in muscle loss and atrophy, something you are not likely to notice necessarily when it comes to the upper body, unless someone has their shirt off. Then you can clearly notice the damage without even having a medical degree.

In another one of Dr. Stubblefield’s slides, and to be clear, none of these images are me, I can tell you, that without my shirt on, my physique is very much like the image on the right. In the other two images, you can also see a “chicken wing” like appearance with the shoulders that I also have, preventing me from having two well rounded shoulders, just flat shoulder blades. With my shirt on, look at me from behind, you might be able to notice one of my shoulders actually does hang lower than the other shoulder. There is also a condition many of us have to deal with, and I currently have mine under fair control, is something referred to as “drooping head syndrome,” appropriately named because it looks exactly like it is called. This is caused by muscle loss in the neck, as the image in the right photo demonstrates. Many of us have heard fellow survivors referred to as “pencil necks” depending on the severity of muscle loss in the neck.

Getting back to airport security, this radiation fibrosis, hardening of my shoulder muscles that are left, prevent me from raising my arms above my shoulders. More times than not, after I get out one of the quickest medical explanations, “I can’t, I have radiation damage from cancer treatments,” most will let me go through as is. Every now and then, there will be someone in TSA who will have an attitude, and make me go through the old metal detector instead. I do not let it bother me, because while some very cool images will show up on my picture, someone else going through might have something nefarious hidden on their person that needs to be caught.

Forcing my arms, as in someone lifting them for me, would tear my shoulders apart. In fact, my doctor was so concerned with injury to my shoulders, that he even advised me against participating in karate with my daughters, even if slow and low impact, modified for my protection, for fear of injuring either or both of my shoulders. As you can tell, I felt I needed to prove my doctor wrong, although admittedly, I did stop following my first belt promotion, a matter of just being able to say that “I did it.”

At work, some of my job descriptions involved reaching above my shoulders, and repetitive motions with my arms. As my condition got worse, it required my doctors to issue health restrictions, which under the Americans With Disabilities Act, required my employer to not only accept those restrictions, but retain my employment, finding other work to complete within those restrictions. Seriously, the ADA exists for peoples’ protection. Learn the law.

Over the decades, I have slowly lost my ability to make my upper body work for me. I cannot do pushups or pullups. I cannot reach for some things in my cabinets without a step stool. Nearly every sport I used to enjoy, volleyball, softball, bowling, are done, my arms unable to perform the functions necessary to participate. The last thing I remember being able to do, and this was more than fifteen years ago, was hoisting my daughters above my head, to carry them on my shoulders.

If there is anything, anything that I truly miss having lost this mobility, it has been to be able to hold my daughters this way ever again (yes, I know they are both much older now, but someday I hope to be a grandfather, and this old perch will never be sat upon like that again.).

Looks can be deceiving. You know what I mean. This shell that we have, hides what is being dealt with inside. Do you know the story of anyone using a handicap spot in a parking lot? What happens when the person looks totally normal, or climbs out of a vehicle that no one with any kind of handicap should be able to do? There are a lot of internal things that you cannot see, functional things as simple as someone struggling for air, due to heart disease or reduced lung capacity. Perhaps as is often the case, some do not want to burden others with a load of pity or empathy for those of us that have limits. People are much happier, and comfortable, when they do not have to think of some of the difficult things that we deal with. That does not change the fact that we still do have to deal with those things.

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